PEDIATRICS Vol. 117 No. 4 April 2006, pp. 1382-1387 (doi:10.1542/peds.2004-2724)
SPECIAL ARTICLE |
Do Differences in the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists Positions on the Ethics of Maternal–Fetal Interventions Reflect Subtly Divergent Professional Sensitivities to Pregnant Women and Fetuses?
a Department of Radiology, Children's Hospital, Boston, Massachusetts
b Division of Critical Care Medicine, Children's Hospital, and Division of Medical Ethics, Harvard Medical School, Boston, Massachusetts
c Office of Ethics, Children's Hospital, Boston, Massachusetts
d Vincent Memorial Obstetric Service, Massachusetts General Hospital, Boston, Massachusetts
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ABSTRACT |
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 TOP ABSTRACT MATERNAL REFUSAL OF...SENSITIVITY TO PSYCHOSOCIAL...CONFLICT RESOLUTIONCOMMON PROBLEMS WITH THE...PRACTICAL IMPLICATIONS FOR...CONCLUSIONREFERENCES |
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As therapeutic interventions that are designed for the direct benefit of the fetus have evolved, pediatric specialists along with obstetricians have become increasingly engaged in the management of pregnancies that are complicated by fetal disorders. Do the 2 groups of medical specialists hold differing "world views" on the nature of the maternal–fetal relationship that could have an impact on decision-making? A direct comparison of the positions of the ethics committees of the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists concerning maternal–fetal conflicts and fetal therapy reveals subtle but telling differences. Compared with the American College of Obstetricians and Gynecologists policy, the American Academy of Pediatrics statement accords somewhat less weight to maternal decision-making and is more tolerant of overriding maternal refusal of interventions that are recommended for fetal benefit. In doing so, it may oblige pregnant patients to assume greater risk and tolerate diminished autonomy. We urge leaders from both disciplines to meet and seek consensus so that a common approach and language can guide treatment of the patients whom we share.
Key Words: ethics • perinatal medicine • pregnancy • professional attitudes • prenatal care
Abbreviations: AAP—American Academy of Pediatrics • ACOG—American College of Obstetricians and Gynecologists • PKU—phenylketonuria
The predominant health care providers for pregnant women in the United States have traditionally been obstetrician/gynecologists (including obstetrically trained maternal–fetal medicine specialists and nurse-midwives). As fetal interventions have grown increasingly sophisticated, however, the American Academy of Pediatrics (AAP) has advocated that pediatric subspecialists be involved directly in the care of pregnant women who are carrying fetuses with complex congenital abnormalities.1 The AAP has encouraged that counseling and consultation of these patients occur within the context of "collaborative multidisciplinary fetal treatment programs." Whereas historically many different types of treatment centers have provided services for both prenatal and postnatal care, more recently, treatment centers that are based primarily in children's hospitals or led primarily by pediatric specialists have been established.
The assumption of greater responsibility by pediatric specialists and medical centers in the management of pregnancies that are complicated by fetal disorders potentially holds important benefits for pregnant women and their fetuses. Providing pregnant women with enhanced access to the pediatric experts who will be caring for the child postnatally may foster better understanding of the abnormalities that are involved and the expected postnatal course, as well as aid in delivery planning.2 Indeed, it may be beneficial to both the pregnant woman and the fetus for pediatric specialists and pediatric medical centers to assume greater responsibility in the care of fetal disorders, but the question that arises is whether the management of fetal conditions by pediatric rather than obstetric specialists will have other consequences that may not be as obvious or as beneficial. For example, will the shift to management of fetal anomalies by pediatric specialists also shift the focus of care to the fetus and perhaps privilege the interests and claims of the fetus over those of the pregnant woman? Several reports suggest that practitioners from various specialties carry different perspectives on pregnancy, genetic syndromes, congenital abnormalities, risk, and the appropriate tenor of prenatal counseling.3–6 Inherent differences in training and experience among specialties may combine with subtle underlying professional biases to create variations in the counseling that is provided to pregnant women. Lenard7 of Heinrich-Heine University in Germany, for example, posited that legal, ethical, and cultural differences that are intrinsic to the obstetric and pediatric specialties engender divergent professional attitudes toward prenatal diagnosis: "Despite efforts toward ethical objectivity, it appears difficult to set criteria completely independent of professional experience and responsibilities, and of legal liabilities sometimes resulting in dialectical patterns of thinking. The mother's needs and wishes will play a paramount role in obstetric considerations. The pediatric point of view necessarily emphasizes the best interests of the child."7
Several published reports support the theory that perinatal counseling may differ among various groups of providers.3,8–10 Some opine that differences between pediatric and obstetric practitioners may relate to how they perceive the prognosis of fetuses with anomalies, the significance of ultrasound diagnoses, and the "best interests" of the fetus and the mother.10 It is likely that there are other confounding factors as well. For example, various studies have demonstrated that differences in physician attitudes toward prenatal diagnosis and abortion may vary with their age, gender, religion, nationality, and ethnicity.8,9,11–13 However, given the increased involvement of pediatric specialists in maternal–fetal care, it is important to be sensitive to the effect that professional training and affiliation may have on attitudes toward maternal–fetal interventions.
One possible indication of professional cultural differences in how obstetricians and pediatricians in the United States view the maternal–fetal relationship is the presence of subtle differences in the positions of the ethics committees of the AAP and the American College of Obstetricians and Gynecologists (ACOG) concerning maternal–fetal interventions.1,14 The AAP's Committee on Bioethics last published its policy statement "Fetal Therapy—Ethical Considerations" in Pediatrics in 1999.1 The ACOG's Committee on Ethics statement "Patient Choice in the Maternal–Fetal Relationship" was most recently revised in 2004. It is available on the ACOG web site (www.acog.org/from%5Fhome/publications/ethics/). Both statements provide guidelines to clinical practitioners who counsel pregnant women and manage pregnancies that are complicated by fetal disorders that may be amenable to direct intervention on the fetus. Both documents recognize the ethical challenges posed by interventions that are designed to benefit the fetus and that must be undertaken through the pregnant woman's body and therefore entail physical maternal risk. Both documents also acknowledge that there are circumstances in which the stated interests of the pregnant woman and the perceived best interests of the fetus may ostensibly diverge and that such instances may present an ethical dilemma for the practitioner. The statements provide frameworks for weighing the risks and benefits involved so that these complex clinical scenarios may be approached ethically and with sensitivity.
Although the AAP and ACOG policies share a common purpose, we have identified 3 important areas of difference between the position papers that have implications for maternal decision-making: (1) the permissibility of using judicial intervention to force treatment on a pregnant woman, (2) the degree of recognition of psychosocial aspects of pregnancy and maternal vulnerability, and (3) the approach to resolving conflict before considering judicial review. After discussing these differences, we note some examples of lack of clarity of language in both policies and the resulting problematic practical implications.
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MATERNAL REFUSAL OF INTERVENTIONS THAT ARE RECOMMENDED FOR FETAL BENEFIT |
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TOPABSTRACTMATERNAL REFUSAL OF...SENSITIVITY TO PSYCHOSOCIAL...CONFLICT RESOLUTIONCOMMON PROBLEMS WITH THE...PRACTICAL IMPLICATIONS FOR...CONCLUSIONREFERENCES |
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Perhaps the most important difference between the 2 position papers is the approach that each takes to the pregnant woman who refuses an intervention that is recommended for fetal benefit. Although both documents express respect for maternal autonomy, the AAP document seems to allow practitioners more latitude in challenging maternal decision-making. In doing so, it advocates more strongly for fetal benefit and for the obligation of pregnant patients to assume greater risks and tolerate diminished autonomy.
The AAP paper states that "if a fetal intervention is one of proven efficacy and has concomitant low maternal risk, the physician should recommend the procedure and emphasize, if necessary, the responsibility of the mother to accept some personal risk for the potential benefit to her fetus." Appropriately, the AAP points out that care must be taken to distinguish those fetal interventions that are "accepted practices of proven efficacy" (eg, provision of prenatal steroids to promote lung maturity, the use of zidovudine [AZT] to prevent perinatal transmission of human immunodeficiency virus), of "uncertain therapeutic efficacy" (eg, fetal transfusion for hydrops secondary to parvovirus), and "research procedures (that) are not standard medical practices" (eg, in utero repair of spina bifida*).
The distinction between proven and experimental or investigational therapy may be important here because the AAP emphasizes that a woman can never be compelled to undergo a treatment that is investigational. The uncertain efficacy of such procedures would preclude strongly directive counseling or opposition to maternal refusal of such prenatal intervention. Although the AAP statement recognizes that a woman's "choice and assessment of risk should be respected," the committee stipulates that a physician may oppose a woman's refusal of an intervention to benefit the fetus if the intervention has been demonstrated to be effective and if there exists a "reasonable certainty" of significant and irreversible fetal harm without intervention and "negligible" maternal risk from intervention.1 In such circumstances, the AAP maintains that a physician may, as a last resort, intervene physically against maternal wishes if the physician has obtained judicial authorization: "Under no circumstances should a physician physically intervene without the explicit consent of the pregnant woman before judicial review, regardless of her lack of physical resistance. If a physician feels strongly that additional intervention is necessary, then judicial authorization is absolutely required. However, given the potential adverse effects of forced medical or surgical procedures, court intervention should be seen only as a last resort."1
One might imagine, congruent with this statement, cases in which women are compelled to receive steroids or AZT. Although the statement does not offer guidance for effecting override of maternal refusal of therapy after judicial authorization, in some cases, physical restraint might be necessary. In summary, despite its discomfort with undermining maternal autonomy, the AAP recognizes and supports circumstances (albeit rare) not only in which judicial authorization may be sought to override maternal decisions but also in which the authorized treatment may be conducted by force.
The ACOG statement acknowledges the pregnant woman's ethical obligation "to promote the well-being of her fetus," although it stops short of the assertion that the woman has a responsibility to assume personal risk for the fetus's sake. The ACOG is ambivalent regarding the use of legal recourse in the setting of maternal refusal of recommended interventions but concedes that there may be "extraordinary circumstances" of irresolvable conflict that warrant judicial review. In such cases, there must be a "high probability" of "serious harm" to the fetus; a "high probability" of preventing or "substantially reducing" harm to the fetus; no "comparably effective, less intrusive options"; and a "high probability" of benefit or a "relatively small" risk to the pregnant woman. However, even in such instances, the ACOG, unlike the AAP, opposes physical intervention in the face of maternal opposition "even in the presence of a court order authorizing intervention"14; this is an important difference in the positions of the 2 organizations. In essence, the AAP is willing to take an additional step toward breaching maternal autonomy that the ACOG views as unjustifiable. One potentially inconsistent aspect of the ACOG statement, however, is that although it opposes force in all cases, it acknowledges that in certain circumstances, judicial review may be warranted. The statement does not address why judicial review would ever be appropriate if force is never permissible.
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SENSITIVITY TO PSYCHOSOCIAL ASPECTS OF PREGNANCY AND MATERNAL VULNERABILITY |
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TOPABSTRACTMATERNAL REFUSAL OF...SENSITIVITY TO PSYCHOSOCIAL...CONFLICT RESOLUTIONCOMMON PROBLEMS WITH THE...PRACTICAL IMPLICATIONS FOR...CONCLUSIONREFERENCES |
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Although the AAP respects "the woman's interest in her own health and freedom from unwanted invasion of her body," it does not address the negative psychosocial implications of overriding a woman's autonomy or of submitting her decision to judicial scrutiny. The ACOG, however, expresses concern about "undesirable societal consequences" that extend beyond the issue of unwanted bodily invasion. It explicitly acknowledges that seeking court authorization not only limits maternal autonomy but also is sociologically problematic. Additional potential adverse consequences of court intervention cited by the ACOG include psychological and spiritual injury, the "criminalization of noncompliance with medical recommendations," "loss of trust in the health care system," and "other social costs" of compromising an individual's liberty. The ACOG specifically enjoins clinicians to weigh these harms as part of the risk/benefit analysis when considering judicial review to challenge maternal decisions. Furthermore, it advises that an obstetrician's response to a pregnant woman's unwillingness to cooperate with medical advice should be not only to convey clearly the reasons for the recommendations but also to examine the barriers to change along with her and encourage the development of health-promoting behavior. The policy emphasizes that providers should "consider the social and cultural context in which decisions are made and to question whether their judgments reinforce existing gender, class, or racial inequality." The ACOG also notes that disadvantaged minorities have been found to be subjected disproportionately to court-ordered interventions during pregnancy.16 The AAP document does not directly account for these psychosocial considerations. By not directly addressing such concerns in its calculus of the risks and harms associated with perinatal treatment, the AAP statement seems to accord less weight to the interests of the woman than does the corresponding ACOG policy, which demonstrates greater sensitivity to the psychosocial aspects of pregnancy and the vulnerability of pregnant patients.
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CONFLICT RESOLUTION |
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TOPABSTRACTMATERNAL REFUSAL OF...SENSITIVITY TO PSYCHOSOCIAL...CONFLICT RESOLUTIONCOMMON PROBLEMS WITH THE...PRACTICAL IMPLICATIONS FOR...CONCLUSIONREFERENCES |
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Another subtle distinction between the 2 policy statements lies in their different approaches to conflict resolution before considering judicial review. The ACOG maintains that such a process should entail "reasonable attempts" to explain recommended treatments to the pregnant woman and to persuade her to comply. Obstetricians are explicitly reminded that often there is important uncertainty concerning both the benefits of a proposed intervention and the outcome without treatment. In advocating for a particular intervention, they "must keep in mind that medical knowledge has limitations and medical judgment is fallible." The ACOG suggests that physicians who find themselves in a moral dilemma still may choose to subordinate their personal ethical values in deference to the woman's decision or otherwise help her to obtain care from another physician. If transferring care is not possible because of urgent circumstances, then "the obstetrician must respect the woman's autonomy, continue to care for the pregnant woman, and not intervene against the patient's wishes, regardless of the consequences." In the end, the ACOG holds that a pregnant woman has a fundamental moral and legal right to refuse medical treatment, and her choice should be respected even if others believe that it is not in the best interests of the fetus.
The AAP statement similarly advises that any conflicts are best managed by direct communication with the patient. The AAP, like the ACOG, advises that consulting other family members or caregivers may help to resolve conflicts. When the woman's decision creates a "moral dilemma" for the physician, "an attempt should be made to persuade (not coerce) her to consent." Both organizations suggest that institutional ethics committees may be useful vehicles for conflict resolution. However, the AAP does not ask physicians to consider subordinating their view to that of the woman or to consider that they may be wrong. Neither does the AAP suggest that it may be reasonable to transfer the patient's care elsewhere. Here, too, the AAP policy accords less weight to maternal decision-making.
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COMMON PROBLEMS WITH THE USE OF LANGUAGE |
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TOPABSTRACTMATERNAL REFUSAL OF...SENSITIVITY TO PSYCHOSOCIAL...CONFLICT RESOLUTIONCOMMON PROBLEMS WITH THE...PRACTICAL IMPLICATIONS FOR...CONCLUSIONREFERENCES |
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Both policy statements use imprecise language to characterize the degree of risk that the pregnant women should be expected to tolerate when considering an intervention for fetal benefit. For example, the AAP does not establish a definition for "proven" or "demonstrated" efficacy of an intervention. AAP uses the criterion of "low risk" of harm to permit directive counseling toward maternal acceptance of "some personal risk," but maternal refusal may be overridden only in the setting of "negligible" risk. This point may seem minor, but these terms, which serve an important function in the AAP's analysis, are open to wide interpretation. In difficult cases, undefined terms may allow substantial room for subjectivity and bias in the determination of efficacy and maternal risks and harms.
Although its analysis is somewhat different, the ACOG's language is similarly vague. For example, the ACOG does not provide standards for "high probability" of fetal benefits and harms, "relatively small" risk for maternal harm, or "high probability" of maternal benefit. An additional problem with the language in the ACOG policy is that "negligible risk" and "possible benefit" are discussed as though they are 2 points on the same spectrum, such that forcing treatment that provides possible benefit to the woman is seen as more ethically justified than forcing treatment that entails negligible risk. This view, however, confounds the risk-benefit spectrum for the fetus with that for the woman and can lead to ethically problematic results. It ignores the ethical principle that we can never justify forcing an intervention on a competent individual purely for her own benefit (as in a situation in which an intervention was recommended principally for maternal well-being). "Negligible risk" and "possible benefit" are categorically different elements in this kind of ethical analysis and should not be conceptualized as being at opposing ends of the same spectrum.
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PRACTICAL IMPLICATIONS FOR EXPECTATIONS OF MATERNAL RISK |
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TOPABSTRACTMATERNAL REFUSAL OF...SENSITIVITY TO PSYCHOSOCIAL...CONFLICT RESOLUTIONCOMMON PROBLEMS WITH THE...PRACTICAL IMPLICATIONS FOR...CONCLUSIONREFERENCES |
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An examination of concrete clinical examples may help to clarify some of the problems that are inherent in the use of terms that are subject to varying interpretations. The ACOG policy does not provide specific clinical examples. The AAP statement provides 1 specific example of an intervention that falls within its standard of entailing "proven efficacy" and "concomitant low maternal risk": using intrauterine fetal transfusions to prevent complications of Rh isoimmunization. One recent retrospective analysis of the outcomes of 740 transfusions for Rh isoimmunization in 252 pregnancies found that 2 transfusions (0.8% of pregnancies) were complicated by intrauterine infection and maternal septicemia.17 Eighteen (2.4%) of 740 of the procedures resulted in an emergency cesarean section for fetal distress, although 2 were not believed to be procedure related and 1 was unclassifiable. Therefore, the risk for emergency cesarean section from transfusion therapy for Rh isoimmunization is estimated as being between 15 in 252 and 18 in 252 (5.9%–7.1%) per pregnancy. These data illustrate that a physician who is counseling a pregnant woman regarding an intervention to benefit the fetus may face difficulty characterizing maternal risk. Can intrauterine transfusion therapy really be considered low risk if there is a 6% to 7% risk of consequent surgical intervention and near 1% risk of sepsis? As the ACOG points out, the woman and the practitioner may value risks and benefits differently. Furthermore, although a single transfusion could be construed to entail low risk, many cases of Rh isoimmunization require multiple fetal transfusions over time, increasing the overall risk to the pregnant woman. Would consenting to 1 "low risk" procedure thereby obligate a woman to pursue a full course of treatments that would subject her to the greater, accrued risk? Despite that there is no concrete standard for determining the threshold below which the incidence of procedure-related emergency cesarean sections or intrauterine infections (from 1 or multiple treatments) represents "low" risk, the AAP guidelines would warrant directive counseling of the pregnant woman, with emphasis on maternal responsibility to accept some degree of personal risk involved in the transfusion therapy.
Because the AAP construes fetal transfusion to be of low but not negligible risk, the group would not condone using judicial authorization to oppose a woman's refusal of such intervention. This may contrast with the recommendations for the use of prenatal steroids and AZT, which the AAP considers accepted practices of proven efficacy. Compared with fetal transfusion therapy, these therapies involve substantially lower risk to maternal health. Indeed, some would perceive them as "negligible." Accordingly, the AAP guidelines would seem to allow physicians to seek a court order to force the woman to undergo these treatments, yet faced with continued maternal objection, such an order might require force to be implemented. Such an approach is discouraged in the ACOG statement.
We can imagine other treatments (eg, insulin or oral agents for pregestational or gestational diabetes, dietary restriction in women with phenylketonuria [PKU] deficiency) that might seem to be of low or negligible risk but with additional scrutiny seem problematic to implement without maternal consent and cooperation. Consider a woman who refuses to comply with dietary restrictions for PKU. If one were counseling the woman, then one could say that she should follow the PKU diet because the risks to her are negligible and the benefits to the fetus are large. If one were considering asking a judge to incarcerate the woman to guarantee her compliance, however, the balance of benefits to harms would shift dramatically. Even if just the threat of punishment were used in place of force to compel treatment, then such threats would greatly compromise a woman's liberty and freedom. We and others18 recognize the potential for such harms separate from any physical harms and believe that undertaking forced interventions or punitive measures for maternal noncompliance therefore never involves a simply "negligible" risk.
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CONCLUSION |
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TOPABSTRACTMATERNAL REFUSAL OF...SENSITIVITY TO PSYCHOSOCIAL...CONFLICT RESOLUTIONCOMMON PROBLEMS WITH THE...PRACTICAL IMPLICATIONS FOR...CONCLUSIONREFERENCES |
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Both AAP and ACOG ethics committees have given serious and thoughtful consideration to the implications that maternal–fetal interventions carry for maternal autonomy. The position papers issued by both organizations reflect strong professional commitments to helping clinicians responsibly negotiate ethical challenges posed by emerging prenatal technologic innovations. There are subtle differences between the 2 organizations' policies, however. The ACOG's position is premised firmly on the principle of maternal autonomy and finds no circumstance in which such autonomy should be trumped by fetal concerns. Although both statements reserve court action for rare and exceptional cases, the AAP would allow judicial authorization of physical interventions against maternal wishes; the ACOG position is that physical force against a pregnant woman is fundamentally inappropriate and should not be undertaken. Hence, while expressing respect for maternal autonomy, the AAP statement on ethical considerations in fetal therapy potentially erodes the autonomy of pregnant women in a concrete manner. Although the AAP statement seems to be predicated on the assumption that a woman is obliged to assume some degree of risk for the sake of the fetus, the ACOG specifically emphasizes that in cases that create unresolved ethical dilemmas for the clinician, the woman should be treated deferentially and given the benefit of the doubt. These differences are consistent with Lenard's view that obstetricians and pediatricians possess divergent professional cultural attitudes in their appraisal of fetal and maternal interests. Over the past decade, different versions of the position statments we have evaluated have been published. It is apparent that the differences that we have identified between the position statements remain entrenched, despite previous criticisms.19
Of course, when treatments during pregnancy are considered, parents and practitioners, whether pediatric or obstetric specialists, will agree more often than disagree. Indeed, the ACOG and the AAP positions more often are congruent than not, and the position papers discussed here, as well as this essay itself, highlight subtle differences that may not frequently affect patient care. However, these differences may attain greater relevance as interventions that are designed for fetal benefit are increasingly studied and performed. They could become amplified by the sometimes vague language that is found in both statements and includes phrases and words that are open to subjective interpretation. This could facilitate subtly coercive counseling that is unwittingly biased by practitioner background and training. Providers and pregnant patients alike would benefit from more clear-cut and well-defined guidelines for conflict resolution. We urge leaders from both disciplines to meet and seek consensus so that a common approach and language can guide treatment of the patients whom we share. Such an approach ideally would recognize not only the importance of the pregnant woman's autonomy but also the potential vulnerability of maternal decision-making to coercion and the difficulty in accurately assigning risk and benefit, each often subjective, to most if not all pregnancy treatments.
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ACKNOWLEDGMENTS |
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This work was supported by a Clinical Investigator Award from the American Diabetes Association (J.L.E.).
S.D.B would like to thank Millie Solomon and the 2003–2004 Fellows in the Division of Medical Ethics at Harvard Medical School for their invaluable support and commentary.
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FOOTNOTES |
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Accepted Sep 8, 2005.
Address correspondence to Stephen D. Brown, MD, Department of Radiology, Children's Hospital, 300 Longwood Ave, Boston, MA 02115. E-mail: Stephen.brown{at}childrens.harvard.edu
The authors have indicated they have no financial relationships relevant to this article to disclose.
* The AAP document specifically uses the example of repair of congenital diaphragmatic hernia, which we have changed to spina bifida, for historical reasons. In utero congenital diaphragmatic hernia repair has been proved not to be efficacious,15 whereas the Management of Myelomeningocele Study for neural tube defects is ongoing. 
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PEDIATRICS (ISSN 1098-4275). ©2006 by the American Academy of Pediatrics
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